The pain women experience due to SPD is intense, but it is mostly dismissed in India.

NEW DELHI — Ilamathi tried describing the pain to her mother, but couldn’t find the right words. It was her fourth month of pregnancy, and her pelvis felt broken, but her mother insisted that was impossible — she could still sit up, that wouldn’t be possible with a bone injury. Yet each time Ilamathi tried to stand, she it felt like someone had kicked her in the groin: the sharp, shooting pain left her in tears even when she tried turning on her side in her sleep.

But most women around her refused to believe something was wrong. Ilamathi should not think about it too much, they said, but the pain only got worse.

“I couldn’t sleep, I couldn’t ride pillion on a bike and I felt a grinding pain if I walked for more than 10 minutes” the 28-year-old masters student told HuffPost India over the phone.

Her medical diagnosis was not too different from the one her family gave her. Ilamathi’s gynaecologist, a well-regarded doctor in Bengaluru, insisted that pain like this was normal and could occur as the baby grew. Ilamathi’s sonography exam was clear: the baby was fine and so was its mother. But Ilamathi knew something wasn’t right.

“My doctor did not prescribe any exercise or give me medicine. I was simply told to bear the pain,” she said. Ilamathi tried. She continued her usual ritual of household chores, because she’d been told by her family that staying active was the best way to have a normal delivery.

Then in the eight month of her pregnancy, she travelled to Salem, her hometown in Tamil Nadu. By now, she had learned to rearrange her life around the pain — she slept on her back whenever she lay down, and each time she stood up, she moved slowly, holding on to something for support. She stopped going for bike rides and learned to put up with the pain. Often, when the pain became unbearable, she would just pray for it to subside.

““My doctor did not prescribe any exercise or give me medicine. I was simply told to bear the pain,” she said”

In Salem, when even the prayers did not work and the pain grew worse, another doctor finally asked her to see a physiotherapist.

This was the first time someone believed Ilamathi. In fact, the physiotherapist was not surprised at all — she had seen many of her pregnant clients suffering from the condition Ilamathi described. The pain was not a normal part of pregnancy, but a condition called symphisis pubis dysfunction (SPD). It could not disappear immediately, and the physiotherapist could only help it subside, but after months of being told that her pain was nothing, someone saying she was not ‘overreacting’ and that it was real, actually came as a relief.

There are very few cases of SPD reported in India every year; as a consequence there is little awareness about the condition. Yet, when HuffPost India posted about the symptoms on various birth networks across Facebook, nearly a dozen women commented on this correspondent’s post, describing the debilitating pain they had suffered due to SPD, how the diagnosis was mostly always delayed, or took place long after birth when the pain refused to subside.

What emerged was a culture in which physical symptoms of women’s pain are frequently dismissed and disbelieved — often by other women and doctors — because they were unable to find the right words to describe their own condition. Physiotherapists told HuffPost India that several factors have contributed to the growing emergence of SPD among women: predictably, changing lifestyles have meant that some women’s bodies have a harder time with pregnancy and childbirth — but since women have lesser independent discretionary income compared to men, their pain matters less.

“What emerged was a culture in which physical symptoms of women’s pain are frequently dismissed and disbelieved — often by other women and doctors — because they were unable to find the right words to describe their own condition.”

On a Facebook group created by an American woman, one woman living with SPD said, “33 weeks and I’m honestly in so much pain had to go get my daughter a Christmas jumper for nursery today and I literally cried all the way round the shop just feel so bloody lonely and useless.”

In the final weeks before giving birth, Ilamathi could barely walk without wincing at every step. Yet, she felt elated — her visit to the physiotherapist had been reassuring, even if it only altered her condition very slightly.

“For four months before that, all I was told that pelvic pain during pregnancy is normal and that I was exaggerating the intensity of it. No one had ever heard of something like this in my family before this,” she said. Older women in her family, who had borne had children before her had grown weary of her constant complaining. She was often told, “You can’t whine about a small pain so much, how will you be a good mother.”

“I felt alone, isolated and started questioning if I was actually overthinking the pain. When everyone told me I was exaggerating, I started to think maybe this was a part of the deal and I was being too dramatic,” she said. Ilamathi did not know anyone else who had gone through such an experience, and most of her conversations with peers was restricted to other women telling her pregnancies and motherhood was difficult.

Dr Nikhil Datar, a Mumbai-based gynaecologist describes SPD as a sort of “play” or minimal movement of pubic bones in a joint called the symphysis pubis that holds the pubic bones together. This joint is actually a very rigid joint. The capsule of the joint does not allow even slightest movement in normal circumstances. However when such joint gets lax, it leads to discomfort and some pain. A dysfunction, like SPD, involves more than the usual amount of movement in the joints, leading to extreme pain.

As a pregnancy advances, Datar said, a hormone called relaxin begins to make the ligaments holding the joint lax. This makes more room for the baby to move down during the labour .

“Usually, the joint is supposed to go back to its normal state post delivery, as the hormones such as relaxin and progesterone are no more prodcued so it is a sort of self-limiting condition,” Datar said.

Datar added that since the condition was related to the movement of the joint and stronger the muscles and ligaments around the joint, less becomes the pain.

Mumbai-based physiotherapist Yogyata Gandhi, who specialises in treating pregnant women, said a lack of lower-body strength leads to weak muscles, which in turn leads to the symphysis pubis becoming more unstable than usual during pregnancy.

“This happens more now because women do not sit on floors or squat much as part of their everyday chores,” Gandhi said. “We do not sit cross legged on the floor also as we used to, we do not use Indian toilets. This may lead to more closed pelvises. During pregnancy, the pelvis can start expanding unevenly.”

DISMISSAL AND SILENCING

Several women HuffPost India spoke to said that they had been told pelvic pain during the initial stages of pregnancy was normal. The isolation Ilamathi described was also echoed by women like digital marketer Basundhara Ghosh, who detailed her experience with SPD in a Facebook post a few weeks after giving birth to her son in June 2019.

Ghosh told HuffPost India that in the beginning of the second trimester of her pregnancy, she had decided to take a quick nap after working in the kitchen.

“When I tried getting up, I could hear a distinctive clicking sound in my bones. I panicked a bit, steadied myself and walked back to the kitchen,” she said. A few hours later, the pain began. Ghosh said it felt like something was crushing her groin. She went to a gynaecologist the very next day, where she was also told that pelvic pain was regular — but that hers sounded suspiciously like SPD. When Ghosh asked her doctor what would ease the pain, her doctor said the pain happens to some women, prescribed some paracetamols and sent Ghosh on her way.

““When I tried getting up, I could hear a distinctive clicking sound in my bones.”

“The pain subsided with the painkillers but sprang back the moment they wore off,” Ghosh said. “The doctor had told me this happens, but that we could not do an x-ray because the radiation could affect the baby, so I freaked out,” she said. “At the same time I wondered, how am I supposed to live with this pain, that felt like a broken bone?”

Ghosh did what most women do when struck with debilitating pain: She had never heard of this condition, so she began asking other women if this was normal.To her shock, some asked her if she had been having “wild sex” and warned her against it.

“Not one, but many women asked if we had been doing crazy stuff in bed, almost mockingly, implying why else is my groin sore and painful. It was so humiliating that I stopped speaking about it for a while,” Ghosh said.

During her first pregnancy in 2017, former IT professional Aarti Mehta had to be rushed to the hospital emergency ward when she got stuck while trying to get up from the bed. “I couldn’t move and I could hear a loud click in sacral bone when I got up. The pain was debilitating,” she told HuffPost India. In the hospital, a physiotherapist diagnosed her with SPD. She had been feeling a dull pain for a while but her peers and family dismissed it as ‘pregnancy-related pelvic pain’. Her gynaecologist said the pain would subside once the baby was delivered and did not make much of it.

“Though Mehta had access to physiotherapists and doctors and was immediately diagnosed, she felt as if no one understood or recognised her pain. At least not the way she was feeling it.”

Though Mehta had access to physiotherapists and doctors and was immediately diagnosed, she felt as if no one understood or recognised her pain. At least not the way she was feeling it.

Mehta remembers the constant struggle to describe and explain her pain demeaning. So she searched on the internet for answers.

“I tried everything that I found in the little literature available on it. Physiotherapy, chiropractor, pilates, and even reiki. But the pain remained,” she said. She got momentary relief from physio, exercises, hot and cold compress and when the pain was particularly bad, she would tie a cotton wrap tightly around her groin.

Chennai-based Aishwarya Parijat, who runs a garments business, also turned to the internet to understand her pain since very few people actually paid attention to what she was saying. In the seventh month of her pregnancy, she lay down on her bed for an afternoon nap and soon realised she couldn’t keep her legs together.

“It felt like my vagina was broken or something,” Parijat said. When she visited her doctor, she was told that since she was nearing the delivery due date and the baby’s head is nearing her cervix, she was feeling the pain.

““It felt like my vagina was broken or something,” Parijat said.”

“I was asked to simply deal with the pain. I was also not allowed to take painkillers as I was in my seventh month of pregnancy,” she told HuffPost India. So she started stuffing three pillows between her legs when she went to sleep, so that her legs did not come together while she was asleep. “The pain was so sharp that in my sleep, if by mistake my legs came together, it felt like a stab to my groin,” she said.

When HuffPost India asked Dr Datar about the women’s complaints about their doctors dismissing the pain, Datar said he always prescribes physiotherapy when women complain of the pain. “However, since you cannot give them strong painkillers, and only have to wait till after delivery to actually address it, I think some doctors don’t tell much to their patients,” he said. Ghosh told HuffPost India, that no doctor attempted to explain her condition to her, the little she understood, was from searching on the internet.

Parijat, Ghosh and two other women described walking with the condition as “waddling, like a duck or a penguin”. In Ghosh’s case, her laboured gait gave away her pregnancy much before she was planning to make it public at her workplace.

Sayantan Sarkar

Basundhara Ghosh had to search on the internet about her condition because nobody seemed to understand it.

It was only when Aishwarya visited a pregnancy coach after reading about them on the internet, that she was asked to visit a physiotherapist. “Still, I did not read much about India or what Indian women do. I tried to see if the stuff mentioned on foreign blogs can be found here,” she said.

Gandhi, the physiotherapist based in Mumbai, pointed out that women in their 50s and 60s had lesser access and privileges to speak about pain like this and as a result, most women asking their mothers or older women in their family are met with confusion. Apart from that, Gandhi pointed out, that the normalisation of pain during pregnancy discourages women from speaking about it.

“There is a mindset that bearing pain during pregnancy is normal. As a result, most women do not talk about it, or actively seek help,” she said.

As Ilamathi’s case shows, even when women actively sought help, the response to it was often dismissive. And worse, they were asked to bear the pain till delivery, which is when they were told, the pain will reduce.

““There is a mindset that bearing pain during pregnancy is normal. As a result, most women do not talk about it, or actively seek help,” she said.”

Pregnancy and post-natal consultant Sonali Shivlani told HuffPost India that one of the reasons for late diagnosis of SPD is that doctors often dismiss women’s many complaints as paranoia or a woman just being overly cautious.

“Sometimes women are paranoid. But a few pointed, specific questions can always reveal if she needs additional help,” Shivali said. She also referred to the detrimental nature of the ‘no pain no gain’ narrative around pregnancies in India.

“I feel in general women are simply told one word for all pregnancy or post delivery complaints - it’s normal. There are of course other additions to these statements like ’something is bound to happen after all your body is changing,” she said.

It has taken years for women to have their pain taken seriously — from post-natal depression to endometriosis, women are required to suck up the pain almost as a designated gender role.

SUPERSTITION

Added to the general societal attitude to gynaecological pain, Indian women are also victims of deep superstition and a resistance to new ideas. Physiotherapists Gandhi and Shilpi Srivastav pointed out that in India, people advise women to not exercise too much during pregnancies.

“I feel in general women are simply told one word for all pregnancy or post delivery complaints - it’s normal.”

“If SPD occurs during pregnancy, most ob-gyns are apprehensive of referring patients to physiotherapists or orthopaedic specialists. There is a lack of update among obgyns about pelvic physiotherapy or the role of physiotherapists in ob-gyn conditions,” Srivastav pointed out, using ob-gyn as shorthand for obstetrician-gynecologist.

Aishwarya, for example, was chastised by her family for spending too much time in the gym. When her pain refused to go, her family accused her of injuring herself at the gym.

“‘You do too much gymming’, literally everyone’s first reaction was that. In fact, my physio suggested that pregnant women should do squats, it helps,” she said. The complete distortion of her pain and the pain itself, led the 29-year-old to severe depression.

“I had not slept for four months properly since the pain started and people did not get what it was. They thought I was being dramatic or I had done something irresponsible,” she said.

When Ghosh travelled to Kolkata for delivery, her gynaecologist — a man renowned for facilitating normal vaginal deliveries — batted away her concerns about SPD. “He said, all women have calcium deficiency, that’s what it was. Nothing to worry about,” Ghosh told HuffPost India. Stumped, Ghosh had to visit another gynaecologist who told her that with the intensity of pain she was describing, she may not be able to bear the pain for a normal delivery.

She had a cesarean birth. Weeks later, when the pain refused to subside, she finally visited an orthopaedic surgeon, who diagnosed her with osteitis pubis, an inflammation of the pubic bone, which he said had aggravated because her condition was not treated on time.

THE ECONOMICS OF PAIN

The shocking lack of awareness, which amounted to a major part of the trauma women with SPD faced, is also closely tied to women’s share in the country’s economy. Pain is talked about when it is deemed commercially viable — enabled by pharma companies and the medical industry. Feminist economist Mitali Nikore pointed out that women’s pain invite less interest and research because in most economies, they have lesser independent discretionary income compared to men.

“Most medical research is facilitated by pharma companies. In US/UK, there is a steady rise in research on medical condition specific to women, yet the grants are very low,” she said.

In India, with women’s spending on themselves being ridiculously low, interest in developing products for their health or stoking a narrative around it, is also low.

“In India, women, especially mothers, never prioritize their own health almost as a conditioning. Their income is spent on household items, children. So it often doesn’t make business sense to fund research on their pain and ways to battle that pain,” Nikore pointed out. She cited a National Family Health Survey survey from 2015-2016 which showed that a staggering number of women surveyed do not even visit doctors by themselves.

The difference in the experiences of the women in India and Indian women abroad are starkly different, illustrating that economic clout is a major determinant in the kind of attention women’s pain gets. Sangeeta Krishnan experienced severe SPD during her second pregnancy last year when she delivered twins in London.

“Krishnan said that throughout her pregnancy her doctors paid attention to her experience of pain and explained what it was.”

Krishnan said that throughout her pregnancy her doctors paid attention to her experience of pain and explained what it was. The midwife she had been interacting with also explained her experience, suggested exercises and a belt she could wear to keep the pelvic muscles together and minimise the pain. She was in pain, but she neither felt abandoned or had to doubt she was right in complaining about the pain.

Ghosh on the other hand, only learnt about the belt after frantic searching on the internet. And even then, no doctor actually listened to her or prescribed her one. Later, when she found a support group on Facebook for women with SPD — founded by Cailin Jade Horwood — for the first time, it felt like she was not alone in this. Women discussed how horrible the pain was in the group, discussed pelvic girdles and hydro belts. “However, there are very few Indians on that group,” Ghosh said, adding she has been prescribed a pelvic belt just a few weeks back, for the first time by the orthopaedic surgeon.

“If you can’t make money out of pain, there will be no research on it,” Nikore explained. This certainly rings true for India.